Don’t ask someone with dementia if they “know your name” or “remember you”
If I can, I always opt to ditch my name tag in a dementia care environment. I let my friends with dementia decide what my name is: I’ve been Susan, Gwendolyn, and various peoples’ kids. I’ve been so many identities to my residents, too: a coworker, a boss, a student, a sibling, a friend from home, and more.
Don’t ask your friend with dementia if they “remember your name” — especially if that person is your parent, spouse, or other family member. It’s quite likely to embarrass them if they can’t place you, and, frankly, it doesn’t really matter what your name is. What matters is how they feel about you.
Here’s my absolute favorite story about what I call, “Timeline Confusion”:
Alicia danced down the hallway, both hands steadily on her walker. She moved her hips from side to side, singing a little song, and smiled at everyone she passed. Her son, Nick, was walking next to her.
Nick was probably one of the best caregivers I’d ever met. It wasn’t just that he visited his mother often, it was how he visited her. He was patient and kind—really, he just understood dementia care. He got it.
Alicia was what I like to call, “pleasantly confused.” She thought it was a different year than it was, liked to sing and dance, and generally enjoyed her life.
One day, I approached the pair as they walked quietly down the hall. Alicia smiled and nodded at everyone she passed, sometimes whispering a, “How do you do!”
“Hey, Alicia,” I said. “We’re having a piano player come in to sing and play music for us. Would you like to come listen?”
“Ah, yes!” she smiled back. “My husband is a great singer,” she said, motioning to her son.
Nick smiled and did not correct her. He put his hand gently on her shoulder and said to me, “We’ll be over there soon.”
I saw Nick again a few minutes later while his mom was occupied with some other residents. “Nick,” I said. “Does your mom usually think that you’re her husband?”
Nick said something that I’ll never forget.
“Sometimes I’m me, sometimes I’m my brother, sometimes I’m my dad, and sometimes I’m just a friend. But she always knows that she loves me,” he smiled.
Nick had nailed it. He understood that, because his mom thought it was 1960, she would have trouble placing him on a timeline.
He knew that his mom recognized him and he knew that she loved him. However, because of her dementia, she thought it was a different year. And, in that year, he would’ve been a teenager.
Using context clues (however mixed up the clues were) Alicia had determined that Nick was her husband: he was the right age, he sure sounded and looked like her husband, and she believed that her son was a young man.
This is the concept that I like to call timeline confusion. It’s not that your loved one doesn’t recognize you, it’s that they can’t place you on a timeline.
What matters is how they feel about you. Not your name or your exact identity.
THIS. sometimes ole miss thinks i’m her son, or her husband, or her cousin bill or her friend kathi, and once she called me “mommy.” doesn’t matter. she knows i’m someone who cares about her.
when my grandmother developed dementia, she took to calling me ‘virginia’. she had gone to a time in her mind when long red hair did not mean her metalhead grandson, it meant her eldest son’s fiancee. she gave me a lot of advice for how to keep my head and my temper with young leo, who could be a handful but was a gem if you didn’t let him push you. “i know you’re a firecracker, ginger,” she’d tell me, “but don’t make a fight out of it. just hear him out and then make your own decision. he respects that.”
i didn’t correct her on my gender or the year or my name. i didn’t tell her that virginia and leo had been married forty years and were doing fine; i thought that might reassure her, but then, it might just throw her for a loop, so i kept it to myself. i kind of wanted to tell her leo had been an excellent mentor to me and she’d taught him well, but i figured i could save that for a better opportunity. (as it happened, i didn’t get the chance, but i think she knew she did a good job.)
i just understood that she saw me as a young person she wanted to teach and look out for, and maybe a person whose agency she wanted to validate despite society trying to squash it.
so i listened to her advice and thanked her, and told her i’d think on it, and she was happy. and i did think on it, too, and it helped me in my relationship with seebs.
people with dementia are still themselves. they’re not clear on the details, but they still love and care and have things to teach.
after my mom’s traumatic brain injury when she came out of the coma the first phone conversation we had she started telling me about me thinking that I was my cousin Margo and it was 1992.
I just want to say that, like- this really isn’t easy. If you’re reading this and you’re feeling bad that you can’t do it, that’s because it’s really fucking hard to look at someone you love and have them not know you. It’s not your fault.
Also each stage of dementia is terrible and each time things get worse you’ll wish you’d appreciated the previous stage more. But the truth is they all suck, and it’s harder for you than for them (which is perhaps the saving grace, on some level, but really incredibly shitty on every other), and if you can’t manage to be cheerful and play along every time your loved one doesn’t know who you are- that’s okay too.
